Following the COVID-19 restrictions imposed for NHS Continuing Healthcare Funding (CHC) since 19 March 2020, the Government has just announced some positive news.

From 1^st September 2020, Clinical Commissioning Groups (CCGs) have been mandated to resume their NHS Continuing Healthcare assessments and appeals. New NHS Guidance has been published for the reintroduction of CHC assessments. But is it back to business, as usual?

At the outset of the COVID-19 pandemic, acute hospitals were instructed to discharge all patients who no longer needed to be in a hospital setting as soon as it was clinically safe to do so. To assist these patients, between 19^th March 2020 to 31^st August 2020, the Government introduced a COVID discharge support fund. This was an emergency interim financial measure to help speed up the discharge of patients from NHS hospitals whilst recognising that it would not be possible to undertake assessments for NHS Continuing Healthcare during the pandemic and lockdown period. Patients were therefore provided with automatic emergency funding for their care. This interim funding was designed to help support the cost of their recovery, rehabilitation and reablement care, with the intention that they would undergo an assessment for CHC in due course, when the situation returned to some kind of normality.

Many individuals will have been discharged from hospital and admitted to care or nursing homes during this period and will have been in receipt of emergency COVID funding. It is important to remember that this is not NHS Continuing Healthcare Funding, and subsequent assessment will inevitably find that some individuals do not meet the criteria for CHC Funding. This does not mean that they were previously eligible and funding has now been withdrawn – the previous funding was solely emergency COVID funding and does not in any way reflect an individual’s eligibility or otherwise.

Thankfully, it now seems that the time has come for CCGs to restart their assessments and appeals. As from 1^st September 2020, the Government wants to resume ‘normality’ as best it can and address the issues of both CHC and Local Authority funded care.

Understanding the difference between these two funding routes is vital. CHC is free at the point of need and is not means-tested. Social care is provided by the Local Authority and is means-tested, and may result in you contributing to the cost of your care or paying for it in full.

For more information, read our blogs:

Part 1 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs and Healthcare Needs

The NHS expects these following outcomes on discharge from hospital:

• 65% of people will require no further care
• 35% of people will require an ongoing package of care

Of those 35% of people who receive ongoing care, it is expected that 10% will require a package of lower intensity than at the start of recovery and will have either a CHC or Local Authority assessment.

Our blogs below have previously raised several concerns, in particular, how the CCGs will cope with the backlog of outstanding assessments and appeals that were deferred, postponed or put on hold due to COVID-19, and at the same time, also deal with the new assessments pending in the pipeline. Our main concerns focused on:

1. Timing – when will normality resume, and what will it look like for those undergoing CHC assessments or appeals?
2. Resources and delay – how will CCGs cope with the huge volume of past, current and future assessments and appeals?
3. How good will the training and supervision be of any new resources and staff coming back from frontline redeployment?
4. Cost implications – will the NHS budget be large enough to recruit resources and fund care?

COVID: How Will Backlogs Impact on NHS Continuing Healthcare Funding?

COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

The Department of Health and Social Care recently published new guidance on 21^st August 2020, which also addresses our concerns. The new guidance deals with the reintroduction of CHC assessments and appeals, specifically:

• How NHS Clinical Commissioning Groups will restart NHS Continuing Healthcare assessment processes from 1st September 2020
• Routine NHS Continuing Healthcare referrals, starting from 1st September 2020

Here is a brief overview of some of the key points you need to know that are taking effect from 1st September 2020:

1. CCGs will need to reintroduce reviews:

CHC assessments, 3 month reviews, 12 month annual reviews and appeals (both at CCG local resolution level and NHS England), will resume.

2. CCGs and Local Authorities will have to:

• Clear backlogs including: CHC outstanding deferred work, referrals, reviews and assessments put on hold between 19 March and 31 August 2020 due to COVID-19
• Manage the reintroduction of routine new CHC referrals
• Ensure that CHC assessments are carried out and eligibility decisions are confirmed within the 6 weeks following a discharge from hospital

3. Comply with the National Framework:

To help get back on track without undue delay, CCGs and Local Authorities will have to liaise closely to establish efficient, robust and legally compliant processes to manage the reintroduction of CHC work whilst still having regard to the National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care.

4. Manage staff resources issues and ability to cope:

This may require recruiting additional professionals to cope with the volume of work.

Additional temporary health and/or social care staff will undoubtedly be required and recruited in order to manage their existing workload as well as catch up with outstanding CHC and social care funding deferred assessments and appeals that have been held in abeyance since March 2020.

This process needs to be strategically planned and managed carefully, to ensure that staff who were redeployed to other frontline roles to help fight COVID since March 2020, are now integrated smoothly back into their CHC roles and are able to restart work from no later than 1 September 2020.

The guidance expects CCGs to also consider using well-trained non-clinical staff, wherever possible, to allow clinical or professional staff time to focus on robust eligibility recommendations for CHC.

Good training and supervision are critical to success and for restoring public confidence in their expectation that assessments and appeals will be conducted robustly in this new climate. Hopefully, this will be an improvement, but we shall have to wait and see!

5. Quality control and training:

The guidance recognises that there will need to be formal arrangements to confirm who is undertaking the Checklist screening assessments on behalf of the CCG and a ‘checklisting’ training programme.

The Checklist is the beginning of the assessment process, and if positive, will enable individuals to progress to a Full Assessment where their eligibility for CHC Funding is considered. Training in the assessment process and the National Framework is essential – both to ensure that everyone who requests a Checklist assessment has that opportunity – and when it does takes place, it is done correctly. It is important to ensure that individuals aren’t screened out of the process prematurely or incorrectly, only causing delays and setbacks to their entitlement to CHC Funding. 

6. ‘Checklisting’:

From 19 March to 31 August 2020 additional Government funding through a COVID-19 budget has been available to enable the NHS to pay for new, or extensions of, existing packages of care and support for patients discharged from hospital, or who would otherwise have been admitted to hospital.

From 1^st September 2020, CCGs and Local Authorities will need to work in close partnership to ensure that an initial Checklist assessment is carried out promptly and in accordance with the National Framework, save, of course, where it is not necessary, such as:

• Where it is clear to practitioners that there is no need for CHC at this point in time;

• The individual has short-term health care needs or is recovering from a temporary condition, and has not yet reached their optimum potential;

• It has been agreed by the CCG that the individual should be referred directly for Full Assessment of eligibility for CHC Funding;

• The individual has a rapidly deteriorating condition and may be entering a terminal phase and the Fast-Track Pathway Tool should be used instead;

• An individual is receiving services under section 117 of the Mental Health Act that are meeting all their assessed needs; or

• It has previously been decided that the individual is not eligible for CHC Funding and it is clear that there has been no change in their needs.

7. Beware the 2^nd Checklist!

Despite depleted resources during the COVID period, there is a suggestion that in some rare circumstances CCGs may have used the Checklist to monitor those individuals who may need longer-term care. However, pursuant to paragraph 115 of the National Framework, it is possible for CCGs to instigate a second Checklist if the individual’s needs reduce in the time frame between a positive CHC Checklist and a Full Assessment. Healthcare needs can, of course, fluctuate over time. But this specific mention will be of real concern to many families whose valid application for CHC Funding may be derailed even before it gets to a Full Assessment.

The guidance expects that individuals should be fully informed of this intervention as it could directly impact on their finances if a second Checklist is imposed on them.

Read our blog: Has your relative been “optimised?” NHS invent more delays to avoid CHC Funding…

8. Audits and checking:

Comprehensive processes will need to be implemented to monitor the speed and quality of deferred assessments and appropriate decision-making regarding eligibility for CHC Funding. Data will be collected regularly to monitor the completion of CHC assessments that were deferred between 19 March and 31 August 2020, and this will continue until the backlog of postponed assessments is completed.

9. Six-weeks to assess post-discharge from hospital:

From 1 September 2020, CCGs and Local Authorities should liaise closely to ensure that those individuals being discharged from hospital have funding and support in place to help them recover and rehabilitate.

An assessment for ongoing health and care needs should take place within 6 weeks of discharge from hospital and a decision about how this care will be funded should also reached within this timescale.

After this 6-week period, CCGs will not be able to draw down from the Government’s discharge support fund and will have to pay out of their own budgets. So, at least there is some pressure on CCGs to perform and carry out an assessment and reach a quick decision.

If, however, a decision is not reached within this 6-week time frame, the CCG or Local Authority paying for the existing care package should continue to do so until the relevant ongoing care assessments have been completed.

In the absence of agreement, it is suggested that the following default position is adopted at the end of the initial 6 week’s funded care:

• Where the CHC or NHS Funded Nursing Care (FNC) assessments are delayed, the CCG remains responsible for paying until CHC/FNC assessment is done.
• Subsequently, where the individual is assessed as not eligible for CHC, responsibility for funding will pass to the Local Authority (and subject to means-testing) in line with existing procedures until their means-tested assessment is completed, after which normal funding routes will apply.

In any event, from week 7 onwards, CCGs and Local Authorities will have to agree on a funding strategy but using their own funds, and not Government discharge support funds, to pay for the individual’s ongoing care.

10. End of the line

Important: The guidance states that the COVID-19 discharge recovery fund budget will not be available from 1 September 2020 onwards to fund any new packages of support for individuals discharged from, or who would have been admitted to, hospital between 19 March and 31 August 2020.

11. Transitional funding

In the meantime, individuals who received a COVID-19 discharge recovery funded package of care between 19 March and 31 August 2020, will continue to be funded under those existing arrangements after this date.

So, at the end of the assessment process:

If an individual is found eligible for CHC Funding, the payment of their care costs will now transfer from the COVID-19 budget over to the CCG’s budget. Any care fees paid by their Local Authority or from private means (self-funders) whilst waiting an assessment, should be refunded to the individual or the Local Authority, in accordance with the National Framework.

Conversely, if an individual is not eligible for CHC Funding, the payment of their care costs will transfer from the COVID-19 budget to their Local Authority and be subject to means-testing with the possibility that they may have to pay for their own care.

Summary:

The NHS should be congratulated on the tremendous service they have undertaken in risking their lives to fight the coronavirus pandemic. They have been supported by Government funding during this crisis which has undoubtedly helped many thousands of people with care and support packages following discharge from hospital. The guidance on the Reintroduction of NHS Continuing Healthcare should assist all those waiting for an assessment or appeal. But, it will inevitably take time, patience and need enhanced resources, whilst CCGs get to grips with clearing their backlogs of assessments and appeals.

Early planning and thorough preparation are essential ingredients for a successful application for CHC Funding. However, families often tell us that they find CHC assessments and appeals overwhelming, daunting, stressful and emotionally draining. If you need professional help or advocacy support with your assessment or appeal, visit our one-to-one page.

For further information, here are some useful links:

https://www.gov.uk/government/publications/hospital-discharge-service-policy-and-operating-model

https://www.gov.uk/government/publications/hospital-discharge-service-action-cards

https://www.gov.uk/government/publications/reintroduction-of-nhs-continuing-healthcare

Jane recently posted a comment which we wanted to share with you. She writes:

“I applied for CHC for my dad who, through my hard work and determination returned him home after a short but disastrous 6 weeks 21/2 years ago in a very highly rated home! He has Alzheimer’s, can be very aggressive and now needs to be fed, is doubly incontinent, we have the best Carer (private) as the system failed us massively in providing care! My mum also suffered from dementia! I applied for CHC for them both in December 2019 and Jan 2020 respectively! My mum’s health was failing fast! She died on 6th April – she had to be fed, had an ungradable sore (acquired in hospital) and was on oxygen and was doubly incontinent requiring regular manual evac [evacuation]! I watched my mum decline rapidly and yet neither were accepted for CHC! I’m not sure how dead a person needs to be to qualify but now I’ve experienced rebuttals and closing rank after appealing! I know it’s wrong but I am also tired of fighting and worry for my dad’s future that has been threatened by his GP in a veiled way. I’m beginning to wish I had never applied [as] mum suffered immeasurably because of my application and appeal, I firmly believe that, there is no other reason for her disgraceful treatment from DNS and GP – I’m saddened and disgusted ? my last communication said that no appeals would be accepted due to Covid 19! What kind of messed up system is this? They have paid for every ounce of their care and are by no means well off! Social workers don’t seem to want to know, they all sing from the same hymn sheet in this area it seems.”

Thank you, Jane, for sharing your personal comments with us about your dear parents and the struggles you have faced.

Your comments raise a number of interesting issues which may be helpful to our readers who are at different stages of their journey, whilst seeking eligibility for NHS Continuing Healthcare Funding (CHC) for a spouse, parent or relative:

1.  Lack of Consistency:

Over the years, many readers have commented on our Care To Be Different website, that applying for CHC Funding is both complex and frustrating, and the outcome is unpredictable. There is often is a fine dividing line between those who get funding, and those who don’t. The assessment process is subjective and therefore prone to inconsistencies, flaws and errors. National surveys indicate that some parts of the country are more likely to award CHC Funding than others and has been referred to as ‘the postcode lottery.’ More needs to be done to make the whole process fairer, more transparent and consistent throughout the country.

Read our blogs:

When are the Government going to fix CHC?
Is the National Framework still working effectively?

2. New to CHC Funding?

Firstly, you need to understand the vital difference between healthcare vs social care needs.

• Healthcare needs are provided by the NHS – free of charge – and include social care needs and accommodation. Healthcare needs are NOT means-tested – so your wealth should never be a consideration.

• Social care needs are provided by the local authority (via Social Services) and ARE means-tested. So, if you have assets, savings or a home, you may have to pay for some or all of your care.

Unfortunately, many people who have not visited our website just don’t grasp this concept from the outset, and will embark on a lengthy CHC battle only to become frustrated when they eventually find out that their relative’s needs are clearly social care needs and simply don’t meet the eligibility criteria for CHC Funding; or else, unwittingly, get corralled down the route of social care assessments (and means-testing) and end up paying for care unnecessarily – when in fact they were CHC all along.

For more information about what constitutes healthcare needs and social care needs, read our blogs:

Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs
Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

3. Primary Health Needs

Eligibility for NHS Continuing Healthcare Funding is NOT about a particular condition or diagnosis, such as Alzheimer’s or dementia. It is about the complexity, intensity and unpredictable nature of those needs and the level and type of care that is needed to meet them. There are claims companies who may tell you that having a diagnosis, or a label for a particular condition is everything, but that isn’t the case. Eligibility for CHC is all about proving that your relative has a ‘Primary Health Need’. In simple terms, this means that they have complex, intense or unpredictable healthcare needs that are not incidental or ancillary to the accommodation your local authority is under a duty to provide and are not of a nature typically provided for by a Social Services. For more information about the Primary Health Needs approach, read our blog:

Apply for NHS Continuing Healthcare Funding if your relative has a ‘primary health need’…

4. The 12 Care Domains

Jane lists a number of medical issues that have affected her parents, including, Alzheimer’s, aggressive behaviour, incontinence (and manual evacuation), skin integrity (ungradable pressure sore), breathing problems (need for oxygen). These, and any other conditions, should all be assessed by the Clinical Commissioning Group’s (CCG) assessors at a Multi-Disciplinary Team (MDT) assessment and be recorded in the Decision Support Tool (DST). The DST comprises of 12 Care Domains, namely:

1. Breathing
2. Nutrition – Food and Drink
3. Continence
4. Skin integrity (including tissue viability)
5. Mobility
6. Communication
7. Psychological and emotional needs
8. Cognition
9. Behaviour
10. Drugs/Medication/Symptom control
11. Altered states of consciousness
12. Other.

Each Care Domain is ‘scored’ and the corresponding level of need is stated in the DST. The CCG’s assessors should look at your relative’s overall healthcare needs holistically and in conjunction with the 4 Key Indicators (Nature, Intensity, Complexity and Unpredictability) when reaching their decision as to whether your relative has a Primary Health Need and is eligible for CHC Funding.

For more  reading around the subject, look at these blogs:

Has your relative been ‘made’ incontinent and developed a pressure sore?
PART 1 – Looking At The 4 Key Indicators: Unlocking the Basics
PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence
PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw
PART 4 – Looking At The Four Key Indicators: Drafting Your Conclusions

5. Closing Ranks

Sadly, Jane’s feelings are not uncommon. Many readers have previously told us how they feel let down by the whole CHC assessment process and believe that it is unnecessarily complex, unduly subjective and slanted in favour of the NHS.

Unfortunately, most GPs and medical practitioners who are not closely involved with the CHC process have little knowledge or understanding about it either, or the issues that affect families on a daily basis.

Social workers usually form part of the MDT assessment panel as a requirement under the National Framework for NHS Continuing Healthcare Funding 2018 (see paragraph 120). However, as with the CCG’s assessors, much depends on their training in the assessment process, understanding of the National Framework and their personal knowledge of the patient they are assessing. For some, it may be their first MDT assessment, and understandably, they may be taking their lead from the more experienced CCG appointed assessor (who may have an eye on budgeting).

6. How ill do you have to be to get CHC Funding?

Jane’s comments “how dead do you have to be…” are a typical reaction, echoing the sheer frustration expressed by many readers who cannot understand why their relative doesn’t qualify for CHC Funding – when their needs are clearly of a complex, intense or unpredictable nature that would justify funding! Remember, eligibility for CHC is all about healthcare needs. So, if you think your relative is eligible, you must pursue their right to a fair and robust assessment for funding and take it to appeal, if necessary. Read some other myths that people have been told about CHC Funding:

17 untruths about NHS Continuing Healthcare funding – Part 1
9 more untruths about NHS Continuing Healthcare – Part 2
The 10 Most Outrageous Excuses For Not Having An NHS Continuing Healthcare Assessment

7. Tired of fighting the NHS? Is the process wearing you down?

The CHC assessment and appeal process can be lengthy and tortuous. There are often long gaps waiting for the MDT and then for the outcome decision to be sent out, and then another lengthy wait for your appeal to reach Panel, followed again by a long wait for that outcome decision to be communicated to you. The process from start to finish should, theoretically, take months, but instead it is taking years! Many families lose patience and give up. Those that dig in for a fight can expect to wait years until a final outcome. In the meantime, they can be forgiven for feeling that they have been failed by a system that is supposed to support them yet leaves them angry and frustrated. You can, of course, get professional advocacy support at any and every stage of the assessment or appeal process, to help take strain off your shoulders. If you want help or wish to discuss a matter with a professional adviser, visit our one-to-one page. We applaud Jane, and all like her, who keep battling for CHC Funding. However difficult and time-consuming it may be, don’t give up! For inspiration, and an example that determination and perseverance pays off, read Admiral Mathias’ story:

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

For more reading around the subject, look at these blogs:

Part 1 – Revealing Insights From A Continuing Healthcare Nurse Advocate…
Part 2 – Revealing Insights From A Continuing Healthcare Nurse Advocate
Don’t Give Up When Faced With Ongoing Delays
Frustrated with CCG delays? Here’s how to complain

8. Dealing with Appeals

The appeal process can be daunting for families, even for seasoned veteran campaigners like Admiral Mathias. But to succeed, you have to persevere. We have written many helpful blogs on tackling the appeal process, depending on whether you are appealing an MDT decision to a CCG’s Local Resolution Panel or to an Independent Review Panel (IRP) conducted by NHS England. Of particular mention, is a very informative blog kindly prepared by a Chair of NHS England panel to help readers understand the appeal process and what goes on at the meeting:

An exclusive Q & A interview with an IRP Chair – a rare insight into conducting your appeal and knowing what to expect on the day.

Here’s some more reading on appeals which you will find useful:

Attending an Assessment or Independent Review Appeal?
Rejected for CHC Funding? Part 1: How To Appeal The MDT Decision
Rejected for CHC Funding? Part 2: How to appeal the Local Resolution Decision
Battling NHS delays – join the queue!

9. COVID-19

Unfortunately, COVID has caused immeasurable delays in both MDT assessments, CCG appeals to Local Resolution Panels and with appeals to NHS England. Most have been on hold for some time whilst the NHS understandably refocuses their attention to battling coronavirus and redeploys key staff to the front line to help with hospital patient discharge.

During lockdown, we hear that some CCGs have been conducting appeals by telephone, and similarly some IRPs have gone ahead, too – albeit in limited numbers.

We agree with Jane, that more needs to be done to process these outstanding appeal cases expeditiously. But, at present, it is difficult to foresee how long it will take to clear the huge backlog of existing assessments and appeals, never mind deal with the new ones currently waiting to fill up the pipeline.

Some positive news!

We have recently heard from one CCG “that under the Restoration and Recovery programme, the CHC team are hoping to recommence Local Resolution Panels towards the end of August 2020, assuming all critical personnel are back in their substantive posts, following re-deployment in response to the introduction of the Covid-19 procedures.  It is expected that when panels recommence, they will be undertaken virtually via MS Teams, in recognition of the social distancing measures and therefore the limitations of face to face meetings. We anticipate undertaking cases in date order dependent on when rationales had been received. Any previously booked Local Resolution Panels that had to be cancelled at the start of the emergency response to Covid-19 will take priority.”

10. Interim Funding – Discharge from hospital and resuming healthcare assessments

Here is some more good news that we can share with you, taken from part of a recent letter from Sir Simon Stevens, Chief Executive of the NHS to CCGs.

“The Government have recently announced that it will continue to provide funding to support timely and appropriate discharge from hospital inpatient care in line with forthcoming updated Hospital Discharge Service Requirements. From 1 September 2020, hospitals and community health and social care partners should fully embed the discharge to assess process. New or extended health and care support will be funded for a period of up to six weeks, following discharge from hospital and during this period a comprehensive care and health assessment for any ongoing care needs, including determining funding eligibility, must now take place. The fund can also be used to provide short term urgent care support for those who would otherwise have been admitted to hospital.

The Government has further decided that CCGs must resume NHS Continuing Healthcare assessments from 1st September 2020 and work with local authorities using the trusted assessor model. Any patients discharged from hospital between the 19th March 2020 and 31st August 2020, whose discharge support package has been paid for by the NHS, will need to be assessed and moved to core NHS, social care or for self-funding arrangements.”

Here are some previous blogs concerning the impact of the COVID crisis on CHC Funding.

COVID: How Will Backlogs Impact on NHS Continuing Healthcare Funding?
COVID-19 – The Impact on NHS Continuing Healthcare Funding (‘CHC’) and How The Current Changes Will Affect You!

Leave your comments below…

Boris Johnson said in his Economy Briefing on 30^th June 2020:

“We won’t wait to fix the problems of social care [which] every government has flunked for the last 30 years. We will end the injustice that some people have to sell their homes to finance the cost of their care whilst others don’t…”

For many years now, Care To Be Different has been helping individuals and their families through the tortuous NHS Continuing Healthcare Funding (CHC) process. CHC is not means-tested, is free at the point of need, and is delivered by the NHS to individuals with a ‘primary healthcare need’ ie who have intense, complex or unpredictable healthcare needs beyond which a local authority can lawfully provide. CHC is provided regardless of wealth or the setting where the care takes place – be it a care or nursing home, your own home, other care facility or a hospice.

CHC was originally provided by individual Strategic Health Authorities, each applying their own assessment criteria. This led to a great deal of subjectivity and inconsistency throughout the country as to who might receive CHC – free care from the NHS – and who would have to pay for it from their own funds (‘self-funders’). The nationwide disparity has been described as a ‘postcode lottery’, and depending on where you lived, could dictate whether you were more or less likely to be awarded CHC. This proved grossly unfair to those deserving of CHC, who were being denied funding by a flawed system. So, two individuals with similar needs may experience totally different outcomes. One may receive a CHC  package and have all their healthcare and social needs paid for in full by the NHS; the other might be forced to pay for their care privately and end up selling their home.

That changed in 2007 with the introduction of the NHS National Framework. The intention was to create a uniform, fair and consistent assessment and appeal process throughout the country with clear nationwide guidelines. The National Framework has since evolved over the years with several revisions, recently culminating in the latest version – The National Framework for NHS Continuing Healthcare Funding and NHS-funded Nursing Care – which came into force on 1^st October 2018. This latest edition is an improvement and addresses some of the previous omissions, but it is not yet the perfect article. The assessment process remains subjective and that means that there is still the opportunity for inconsistency and errors in its application and the outcome as to eligibility for CHC Funding. Many families feel that the process is slanted in favour of the NHS and it is not user-friendly.

The National Framework principally deals with the issues surrounding NHS CHC Funded care which also includes social care funding, so there is, of course, interaction with local authority funding, mention of joint packages of care (funded jointly by both the NHS and local authority) and now inclusion of the Care Act 2014 (which deals with social care funding issues and assessments).

If you are ineligible for CHC Funding, then you should pass over to the social services to see if you are eligible for alternative funding instead from the local authority. The difference is that local authority funding is means-tested, and so, depending the level of your assets and savings, you could well end up paying for your own care if you are over the threshold (£23,350).

For more information about what constitutes healthcare needs and social care needs, read our blogs:

Part 1. Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Part 2 – Explaining The Vital Difference Between Social Needs vs Healthcare Needs

Care provided in your own home or in a care home can be very expensive, often costing on average around £6,000 a month / £72,000 a year and upwards – depending on your locality and facilities offered by the care home. Care homes will demand regular payment as part of the contractual arrangement. If self-funding, care fees can mount up pretty quickly and the family assets – usually the home – is often sold to pay for a relative’s care.

The Prime Minister talks of boosting NHS funds and creating 40 more new hospitals, which is both welcome and much needed. He talks about improving social care and also not having to sell your home to pay for social care – also most welcome!

But, he does not specifically mention NHS Continuing Healthcare! At the heart of the National Framework (and supported by Section 9 of the Care Act 2014) is the core principle that eligibility for CHC should be considered before local authority funding or private funding are ever mentioned. The first discussion should always be about healthcare needs ie CHC, and not how you are going to pay for your care! Unfortunately, that is not always the case, and quite often, CHC is not even on the agenda.

Transparency: The PM doesn’t deal with the NHS’s past failings to openly tell the public about the availability of NHS Continuing Healthcare Funding, or of its failure to freely volunteer an initial assessment to at least ascertain whether an individual could be eligible for CHC.

The outcome of a successful CHC application should result in all your assessed healthcare needs being paid in full, by the NHS, free of charge. No need to sell your home; no need to contribute to your healthcare needs! You’ve saved all your life and paid taxes, so that at the point in your life when you most need care, you should be entitled to receive it free of charge.

Sadly, however, CHC rarely features on the public agenda. Unless you happen to come across it by chance, most families looking into care will never have even heard of it, and instead will be pushed down the route of self-funding care and most likely having to sell their home. CHC is has been described as the ‘NHS’s best kept secret’. Care To Be Different strives to promote CHC and offers families lots of free resources and information on its website to help you navigate the CHC system.

Whilst the NHS have excelled in coping with coronavirus, the Prime Minister has not yet addressed the misery that thousands of families have suffered as a result of inadequate and flawed NHS CHC assessments – where individuals justly deserving of free NHS care packages to meet their healthcare needs – have been turned down for CHC Funding and instead have been forced to sell their home to pay for their care. Remember: CHC is ‘free at the point of delivery’ (paragraph 180 of the National Framework). Nor has the PM yet sought to address the assessment and appeal’s process which still remains flawed and far too subjective, frequently leading to incorrect outcomes and decisions to reject or withdraw existing CHC Funding – which are fundamentally wrong – heaping distress and financial misery on families. As an example, read Admiral Mathias’ story:

‘Fighting for NHS funding for my mother was as complex as my work on the nuclear deterrent…’

We wonder how many thousands of homes have been sold needlessly over the years to pay for care, which should have been funded by the NHS? Had CHC been awarded, then this stressful and anxious situation could have been avoided. Read our blog: Is the National Framework still working effectively?

Hopefully, the Prime Minister will address these funding issues when the Government reviews social care funding.

Paying care home fees or paying for full-time care at home? You could be entitled to NHS Continuing Healthcare.

What contribution do I have to make towards my care costs, and when?

New to NHS Continuing Healthcare Funding? Here’s a guide to the basics you need to know…

Leave a comment below and let us know what you think the Government ought to be doing to promote the awareness and availability of CHC Funding…

Here’s a quick recap:

In PART 1- Looking At The 4 Key Indicators: Unlocking the basics, we gave an outline introduction to the 4 Key Indicators, what they are, and how they are considered by the Multi-Disciplinary Team’s assessment process when completing their Decision Support Tool (DST).

In PART 2 – Looking At The 4 Key Indicators: Gathering pieces of evidence, we looked in more detail at the 4 Key Indicators and the type of evidence that ought be obtained and considered when creating the jigsaw picture of needs in the Decision Support Tool (DST).

In PART 3 – Looking At The Four Key Indicators: Completing the Jigsaw, we explored the issues around completing the 4 Key Indicators and how the pieces of information gathered, must connect and interact between the various Care Domains to complete the picture. Only then can you stand back and look at the overall needs holistically and reach a recommendation as to eligibility for CHC Funding.

In the final blog in the series we offer some tips when drafting the Key Indicators (Nature, Intensity, Complexity and Unpredictability) and give a detailed worked example.

Writing the Key Indicators is a skill which most families will not and cannot be expected to know. To do the job properly involves years of experience, being able to digest an enormous amount of detail, and summarising the information in a coherent and meaningful manner.

Given that the outcome of the assessment (or appeal) can make the difference between your relative getting a fully-funded package of free CHC care and paying nothing, or paying many thousands of pounds a week in care fees, we recommend getting professional help. Visit our one-to-one page for more information.

As we said in PART 3, the Key Indicators should provide a summary of the individual’s needs. When you read the 4 Key Indicators, you should know what the individual’s needs are and how they are being cared for.

We also recommended breaking each Key Indicator into smaller periods of time (eg annually) rather than summarising long periods care needs spanning many years, as if it’s all one continuous period. This latter approach may be unrealistic as it might appear that the level of need was consistent throughout, when in reality it is likely to fluctuate over a number of years. So, breaking the Key Indicators into smaller batches of time might work to your advantage.

We suggest writing the Key Indicators in neutral terms, stating the facts and linking the care needs across the Domains, before adding a conclusion at the end of each section.

Top Tips for Nature

The key tip here is to use ‘Nature’ to set out your stall in great detail. Include plenty of factual evidence from the 12 Care Domains in this section and state the care needs resulting.

Consider doing a timeline to identify ‘ups’ and ‘downs’. Look for patterns and see what needs were impacting on others. This can often make it easier to see where needs have changed eg from mobile to immobile, or where there has been an intervening event, such as a stroke. Use your timeline to plot events and write ‘Nature’.

Don’t put your conclusion at the beginning of the paragraph eg: ‘Mrs X was eligible for CHC because…’, and watch out for CCG assessments where this happens, as the temptation is to justify why the care is not needed rather than to look positively at the care needs.

Rather, it is better to start paragraphs: ‘Mrs X needed carers to…’

Don’t be tempted to write about what care the individual doesn’t need and watch out for CCGs doing this to justify a non-eligible decision – it is likely that they will have forgotten the actual needs.

State the level of need you have selected (or that the CCG has agreed), and select your terminology and adjectives carefully e.g. ‘had considerable needs’ or ‘had no ability to assist carers’ or ‘was unable to co-operate in the care’ or ‘was resistive to her care’.

Avoid using bullet points.

Don’t forget to identify any unmet needs and mention what should have been happening. Remember in Part 3 we discussed reading in-between the lines and identifying needs.

Consider practical care needs. Using the evidence collected in the Care Domains, think about the individual’s day, how they get up, what carers need to do throughout the day until bed, what care is needed at night, when the challenging behaviours take place (e.g. if at 2am or 3am  – is there limited staff available?), who is involved in their care, how long it takes and what skills are needed to do it. This will undoubtedly help you link the Domains and consider how they interact.

Think about the practical aspects of caring for the individual. For example, do they eat in bed or in the lounge? If in bed, perhaps only 1:1 care is needed to assist with feeding; but do they need 2:1 to be positioned  beforehand and afterwards?

Look at reports from any specialists. Do they give specific care instructions e.g. SALT often say things like ‘stage 2 fluids’, ‘thickened liquids’, ‘feed upright’, ‘sit upright for 30 minutes after meals’ etc. Make sure these instructions are recorded in ‘Nutrition’. Reiterate it in ‘Nature’ and link it to ‘Mobility’ issues. For example, can they hold the beaker/cup themselves, and if not, is there a time implication? Invariably there will also be a skills issue if they have a swallow deficit or aspiration risk, as carers will need to take time around meals and drinks throughout the day, and will need the competence to feed the individual. Is the sitting balance poor – as this adds to the difficulty; or do they need propping up to feed? Do they have poor head control?

For example, a Parkinson’s specialist report may have helpful information that is often lost in the DST. Under ‘Mobility’ ensure the detail is included (e.g. ’freezing’, ‘cogwheel like movements’), and state how this impacts on walking, transferring, holding a cup or spoon. Timing of medication is generally crucial for Parkinson’s – how often are they having the medication (usually 4 times a day), and are there any compliance issues? Repeat the information in the 4 Key Indicators.

‘Behaviour’ – if they are generally non-compliant or resistive to care, explain how often and how many carers are needed and for what specific tasks, and include to which aspects of care they are resistive? Don’t forget to add it onto your paragraph about each of those Domains e.g. ‘Mrs X  was doubly incontinent and needed 2 carers to assist with pad changes due to her poor mobility (‘High’ needs) and was resistive to pad changes (‘Moderate’ needs) and had poor cognition (‘Severe’ needs). Carers needed to take extra time to perform the care and experienced carers were needed.’

Think about how each Domain is impacted by all the others and write everything down. Don’t just write ‘had needs in several domains’. You must explain how it impacted. Go into detail and think practically.

Remember that ‘Nature’ is a Key Indicator so a person can be eligible under this heading, so take your time and include lots of detail.

Make sure you conclude with a summary stating with a line to this effect: “The nature of Mrs X’s needs are such that they cannot be lawfully met by the Local Authority.”

Top tips on Intensity

If you prepared a detailed summary under Nature, you can use that to capture the main points in this Key Indicator, perhaps excluding some of the less relevant material here.

Make sure you conclude with something like: “Mrs X presents with a level of intensity that cannot be lawfully met by the Local Authority.”

Top tips on Complexity

If you prepared a detailed summary under Nature, you can use that to capture the main points in this Key Indicator, perhaps excluding some of the less relevant material here.

Make sure you conclude: “The [degree of] complexity of Mrs X’s needs cannot be lawfully met by the Local Authority.”

Top tips on Unpredictability

This is often the hardest indicator to write.

Think: does the individual’s health yo-yo? Are they having lots of infections that are increasing/changing care needs for periods? Are there lots of medication changes to try to get the condition under control, and if so, why is this, and how are the changes impacting on carers? Do they have lots of seizures that need rapid response? Describe what is needed and the care home’s ability to meet those needs. Does the care plan frequently need to change? Do carers need to respond to the change quickly and if so, what do they need to do? Is the individual well one day and not the next, so that carers need to assess them daily?

Try and avoid the use of the words ‘predictable’ and ‘unpredictable’ as it means different things in normal daily use. Instead use words or phrases like ‘unstable’, ‘needs kept changing’, ’it is difficult to plan care because…’, or ‘the number of carers and tasks that they needed to do changed daily because…’

If there is challenging behaviour, explain in a short paragraph: ‘It was known that Mrs X would be resistive on personal care and this was accommodated in the care plan…’

Write your Key Indicator summary at the end, don’t lead with your conclusion at the beginning (see Nature above).

Make sure you conclude with a sentence such as: “Mrs X’s care needs are unpredictable and beyond the remit of what the Local Authority can lawfully provide.”

Here’s an example of well-drafted Key Indicators using a hypothetical patient, “Mrs X” (not her real name). Of course, each case will depend on its own facts, but you might recognise some common needs below.

Nature:

Mrs X is unable to assess risk to herself or others and does not have any insight into her care needs. Mrs X places herself at risk by her impulsive behaviour and her tendency to stand unaided and fall. Mrs X has some short and long term memory issues and at times she is confused and agitated. This is often related to urine infections. Mrs X is able to recognise her 3 children but has difficulty with some other members of the family.

Mrs X is able to make simple choices if assisted by the staff and at times she can become fixated on certain topics and suffers for delusions. Mrs X also has hallucinations and suffers with low mood, lack of motivation and apathy. Mrs X has been prescribed Citalopram and the dose increased.

Mrs X is unable to participate in activities such as watching the television due to her restricted eye movement and her inability to communicate effectively. Mrs X has been diagnosed with dysarthria and she is unable to form words very easily and she cannot form a sentence. Mrs X appears to have a limited level of comprehension and it is possible to ascertain her care needs if the family and staff who are familiar with her are present.

Mrs X is able to use her call bell, which is on a cord around her neck. Mrs X has a very soft voice and an amplifier has been provided by the Speech and Language Therapist. Mrs X is unable to use facial expression or hand and body gestures to communicate.

Mrs X has suffered with numerous falls and significant minor injuries. Mrs X will attempt to stand unaided and fall, crash and falls mats are now in place to reduce the risk of injury. Mrs X has a very stiff and rigid upper body and her right arm is contracted which causes pain and a painful shoulder. Mrs X has difficulty moving her legs and feet but can be transferred with two members of staff. Mrs X does not have any sitting balance and if leaning forward she will topple out of her chair. Mrs X has a specialised recliner and wheelchair. Mrs X suffers with giddiness and postural hypotension.

Mrs X has suffered with dehydration and difficulty swallowing and a PEG was inserted to enable her to meet her nutritional requirements. Mrs X is at risk of choking and aspiration but in order to enhance her quality of life she is offered a small amount of pureed food and thickened fluids at mealtimes. Mrs X has remained free of chest infections. However, there is an indication that she suffers with breathlessness when eating. Mrs X tends to suffer with a dry mouth and she has been prescribed oral balance gel. There has been a problem with the PEG due to a split in the tube and this was replaced. Mrs X receives her PEG feed via bolus administration 5 times a day.

Mrs X’s weight has fluctuated but currently she is not at nutritional risk.

Mrs X is incontinent of urine and will frequently ask to use the toilet due to an overactive bladder caused by detrusor hyper-reflexia. Mrs X has been treated for several urine infections and she wears continence pads and the staff take her to the toilet on a regular basis. Mrs X suffers with constipation and is prescribed medication to manage her bowels, she is occasionally incontinent of faeces.

Mrs X has suffered with significant minor injuries to her skin due to falls and washing and dressing. Mrs X is at very high risk of developing skin integrity issues particularly as her mobility is restricted and her skin is very thin and tears easily. Mrs X’s PEG site has a daily cleaning regime and is currently clean and dry and the staff undertake preventative intervention several times a day. Mrs X becomes very hot and sweaty and particular attention has to be taken in relation to skin folds and creases.

Mrs X’s medication is administered via her PEG where appropriate. Mrs X suffers with pain and her analgesia has been adjusted. Mrs X’s medication needs to be administered at specific times to prevent any relapse in her condition. Mrs X has eye drops and medication specifically related to her tendency to be dizzy, postural hypotension and rigidity.

Mrs X has suffered one episode of unresponsiveness when she fell and suffered a head injury.

The nature of Mrs X’s needs are such that they cannot be lawfully met by the Local Authority.

Intensity:

Mrs X needs all her care needs to be met by the staff. Due to Mrs X’s inability to assess risk and her frequent attempts to stand unaided and falling she needs to be closely monitored and falls and crash mats are now in place.

Mrs X has a low rise bed and despite these management strategies she requires very close monitoring particularly when she is confused and agitated due to urine infections. Mrs X will press her call bell frequently even though she may have just received care, when the staff leave her she has been known to frequently fall. When Mrs X presses her bell the staff have to go through a process of elimination to ascertain if she requires anything. Mrs X’s tendency to be impulsive increases the amount of times the staff have to ensure she is safe, this is evident during the day and night.

Mrs X needs additional time to communicate with the staff and for the staff to take time and skill to ensure they have interpreted what she requires. At times Mrs X can become fixated on certain topics and it is difficult to distract her.

Mrs X is able to weight bear but requires two members of staff to transfer or reposition her. Mrs X is very stiff and finds it difficult to move her legs and feet and her upper body is rigid. Mrs X suffers with pain in her contracted arm and associated shoulder and she needs to be transferred and moved with care and consideration given her tendency to be giddy and suffer with postural hypotension.

Mrs X has a PEG in situ, and she is in receipt of five bolus feeds a day as well as water 30mls pre and post bolus feed and additional water with her medications which is undertaken three times a day. This equates to eight care interventions a day plus the care of the PEG site and this has to be undertaken by the nursing staff. In addition, Mrs X is offered a small amount of diet and fluids for pleasure and she can take some time to eat. Mrs X has to be in the correct position during the receipt of her PEG and oral nutrition and remain in this position for at least 45 minutes to prevent the risk of choking and aspiration. Mrs X is also weighed on a monthly basis.

Mrs X has been diagnosed with an overactive bladder and will frequently ask for the toilet. Mrs X has continence pads in situ and is occasionally incontinent of faeces. The staff have to provide preventative intervention several times a day to reduce the risk of skin integrity issues and on a daily basis a skin check is required due to the fragility of her skin and propensity to suffer skin tears. During washing and dressing and any transfers or repositioning the staff have to be very careful not to cause her any damage to her skin. At times Mrs X has required dressings to skin wounds that she has sustained from falls.

Mrs X requires frequent interventions during the day and night related to all her care needs and the staff need to be skilled and knowledgeable and fully aware of her presenting condition to reduce the risks she is exposed to. In order to reduce any risks, the staff have to ensure that they undertake Mrs X’s care needs in a timely fashion and with care attention.

Mrs X presents with a level of intensity that cannot be lawfully met by the Local Authority.

Complexity:

Mrs X has a high level of care needs that interact across the care domains. Mrs X has a high level of cognitive impairment and is unable to assess risk to herself. Mrs X is very impulsive and will attempt to stand unaided and has fallen and suffered with significant minor injuries. Mrs X has short term memory loss and is unable to remember that she is likely to fall should she try to mobilise unaided.

The risk of falling has been exacerbated by postural hypotension and giddiness. Mrs X is also unable to control her balance and when leaning forward in the chair she is at high risk of falling forwards, which she has on a number of occasions. Mrs X does not have any sitting balance and she has a specialised chair and wheelchair to support her. Mrs X has a very rigid upper body and one of her arms is contracted, this prevents her from responding to any potential falls and reducing any injury that may occur. Mrs X has fractured her femur in the past and is prescribed Zoledronic Acid IV every year to reduce the risk of further fractures should she fall.

Mrs X suffers with pain and is prescribed a Butrans Patch 10mcg and Paracetamol, but she still has discomfort in her arm and shoulder and is particularly an issue when being moved and repositioned.

At times of infection Mrs X becomes more confused and agitated and she experiences vivid dreams and hallucinations. Mrs X also has the tendency to become fixated on a certain topic and it is difficult to distract her, if not impossible at times. Mrs X is prescribed an antidepressant and the dose of this medication has recently been increased due to low mood, she had become apathetic and lost interest in herself. Mrs X has experienced a significant amount of change and trauma in her life recently and she has withdrawn from a majority of activities and socialising with other residents. Mrs X has become dependent on her very supportive family and the staff for her interaction and support.

Mrs X has difficulty communicating her care needs and will become frustrated. Mrs X has difficulty moving her lower jaw to form words and her speech is slurred. Mrs X may be able to say one word, but she cannot form a sentence and she has a speech amplifier as her speech is very quiet. Mrs X is unable to communicate using facial expression or hand gestures and the staff have to anticipate her care needs which is also evident when she has pushed her call bell. Mrs X is unable to look down as her eye movement is restricted and she looks to the ceiling all the time. This impacts upon her ability to use eye movement to communicate and also increases the difficulty she has viewing anything, like the television. Mrs X’s hearing appears to be intact. The Speech and Language Therapist has provided equipment to aid Mrs X when she attempts to communicate.

Mrs X is at high risk of choking and aspiration and she receives her nutrition via the PEG which is delivered five times a day. In order to maintain some pleasure, Mrs X is offered thickened fluids and a pureed diet at normal mealtimes, but she is only to be offered up to 10 teaspoons of food and fluid at one mealtime. Mrs X is clearly at risk of choking and aspiration and an agreement has been reached with the Speech and Language Therapist that in order to maintain some pleasure regarding food and fluid that a small amount of diet can be offered. It is very important to note that although Mrs X does not need any oral intake to maintain her nutrition, however, it is of great importance that for her general health and wellbeing this is continued for as long as possible. Mrs X is weighed monthly and reviewed by the Dietician on a regular basis to ensure her feeding regime is meeting her nutritional needs.

The staff have to be skilled, knowledgeable and trained to administer the PEG feeds and assist Mrs X with her puree diet and thickened fluids meals and be aware that she needs to be in an upright position during and after receipt of any method of delivery to reduce the risk of choking and aspiration. This is also to be undertaken when Mrs X has her medication administered via the PEG. Mrs X can become breathless when eating or drinking and she is prescribed oral balance gel due to a dry mouth. If Mrs X should choke the staff have to know how to respond appropriately.

Mrs X experiences urinary frequency and incontinence and she has been diagnosed with an overactive bladder due to detrusor hyper-reflexia and will frequently want to use the toilet and then not pass any urine. Mrs X was previously prescribed medication in order to manage this problem, but this is not evident at the time of assessment. Mrs X suffers with frequent urine infections which are treated with antibiotics and she becomes confused and agitated. Mrs X is prescribed medication to manage her bowels as she tends to become constipated. Mrs X is occasionally incontinent of faeces.

Mrs X is at high risk of developing skin integrity issues. This is due to her immobility and urinary incontinence as well as her tendency to become very hot and sweaty. Preventative intervention is required several times a day and she has been provided with a pressure relieving mattress and specialist chairs with pressure relieving qualities. Mrs X has very thin skin and she bruises easily, and she has suffered with significant wounds to her legs and head due to falls, and also skin tears during washing and dressing. Removing Mrs X’s top clothing and washing and drying the skin folds is difficult due to the contractures, rigidity and pain she suffers in her upper body.

Mrs X is prescribed analgesia, but she still suffers with pain. The PEG site has to be cleaned on a daily basis and inspected for patency given the issue that was experienced in [date] when the PEG tube was cracked and had to be replaced.

Mrs X is administered her medication via the PEG where appropriate. Mrs X is prescribed Pyridostigimine which has to be given on time otherwise her symptoms are likely to become worse. Mrs X remains under the care of the Neurological Team and she has been referred to the Hospice for symptom management when required.

Mrs X is presenting with a range of care needs that are complex in nature and cannot be viewed in isolation of each other. Mrs X has been at the nursing home since [date] and the staff have become skilled and knowledgeable in relation to her diagnosis and her presenting care needs. The staff would have required additional training to understand the disease process and the associated care needs to understand and adequately plan Mrs X’s care in order to reduce the risks that she is constantly exposed to.

The degree of complexity of Mrs X’s needs cannot be lawfully met by the Local Authority.

Unpredictability:

The nature of Mrs X’s disease is progressive and consequently unpredictable. Mrs X has clearly deteriorated since the beginning of [date] and her functional status has reduced. There did not appear to be a specific reason for this decline and her care needs. Mrs X’s care needs are, in part, being met due to the skill of the staff and knowledge of her condition. The staff have become familiar with Mrs X and her disease pathway and this is of great benefit to her.

The deterioration that Mrs X has experienced in the past and also suffered at the beginning of [date] indicates that this is very likely to happen again given the deteriorating nature of the condition she is suffering. Mrs X will continue to present with urine infections and falls and the risks already highlighted will not reduce albeit they may change as the disease progresses.

Mrs X’s care needs are unpredictable and beyond the remit of what the Local Authority can lawfully provide.

Recommendation:

Having reviewed all the evidence, and having considered the nature, complexity, intensity and unpredictability of Mrs X’s overall healthcare needs (taking into account any interaction between those needs and the evidence from all supporting information provided), it is recommended that Mrs X did have a Primary Health Need, as identified by the MDT [date(s)] and at the time of assessment on [date], as her care needs were over and above that which the Local Authority would be expected to provide.

In conclusion:

We hope that you have found the series of blogs on the Key Indicators helpful and will now give you more confidence in dealing with the DST and understanding the level of detail (and time!) required to compile a thorough assessment of needs.

Getting to grips with the 4 Key Indicators underpins the whole assessment and appeal process. However, we expect that most families are going to need specialist help at the MDT or with an appeal, to avoid being over-whelmed by the CCG’s assessors and the whole process. Otherwise, they could jeopardise their relative’s chances of success. If you want help, visit our one-to-one page for more information of call our Advice Line.

If you don’t agree with the CCG’s outcome following the MDT – then you must appeal. Beware, as there are strict time limits for doing so. Our caretobedifferent website contains many free useful articles and tips on appealing. Use the search box to take a look.

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Preparing for the Multi-Disciplinary Team Assessment

What Happens At The Multi-Disciplinary Team Meeting?

Don’t let the Decision Support Tool become a ‘tick box’ exercise

What Is The Role Of The MDT Coordinator?

Who completes the Decision Support Tool in NHS Continuing Healthcare?

What to do if you’ve been excluded from the MDT Assessment?

In Part 1- Looking At The 4 Key Indicators: Unlocking the basics, we gave an outline introduction to the 4 Key Indicators, what they are, and how they are considered by the Multi-Disciplinary Team’s assessment process when completing their Decision Support Tool (DST).

In this blog, we explore in more detail the evidence you need and how that ties in with the Key Indicators (otherwise known as ‘Characteristics’).

Assessing eligibility for NHS Continuing Healthcare Funding (CHC) is entirely subjective and relies on the competence, skill, training and integrity of the appointed MDT assessors carrying out the assessment. There should be a minimum of 2 assessors (including a healthcare and social care professional) who have been trained in the National Framework and recently involved with the individual’s treatment or care needs.

The DST is a tool used to build up a comprehensive (holistic) picture of the individual’s care needs which is used by the MDT assessors to make a recommendation for or against CHC Funding.

Think of the DST as a jigsaw puzzle. The DST is the process of collating the pieces of evidence together in one place.

What evidence should the MDT assessors look at when completing the DST?

The whole assessment process is intended to be ‘person centric’ ie putting the individual first and foremost, and to ensure that they and their (family) representatives are involved in the journey and have their views taken into consideration. That is the core essence underpinning the National Framework. The assessment should not be carried out without their knowledge or consent, and they and their representative(s) must be given every opportunity to be present and contribute.

Therefore, it is incumbent upon the MDT assessors to meet the individual in person, in order to be able to identify and assess their medical condition and obvious healthcare needs, first-hand.

In carrying out their assessment and reaching their conclusions as to eligibility, the MDT assessors should access all relevant evidence to get a broader perspective of the individual’s daily needs and the level of care and input required to manage them.

This evidence may include things such as the following examples:

• Care/Nursing home notes and records (including all Care Plans, Risk Assessments eg Falls / Behaviour)
• Health need assessments
• Speech and Language Therapy (SALT) assessments
• Waterlow scores
• Carer’s views
• GP records
• Hospital records
• Any treatment and therapy records
• Occupational assessments
• Nursing and Psychiatric assessments
• Specialist Nursing records (eg Tissue Viability / Dementia)

All this evidence is designed to help build a bigger holistic picture of the individual’s overall care needs, so that an accurate recommendation for eligibility for CHC can be made.

It is vital that you try and obtain all relevant records yourself so that you can see if they accurately reflect your relative’s actual day-to-day care needs. Often the care home records will be inadequate, incomplete, misleading, or just plainly wrong!

Therefore, it is essential that you are present at the MDT to ensure that the MDT assessors have all the necessary and relevant information available to make an informed recommendation. You can supplement any gaps and answer any questions they may have about your relative’s needs. It’s a good idea to check with them what evidence they have seen and read and identify anything that you think is missing and ought to be considered. Don’t be shy to contribute! After all, you and your relative are at the heart of this ‘person centred’ approach. But, be careful not to make representations that could undermine your relative’s case.

The MDT assessors will record the information and sources viewed in the DST in relation to each of the 12 Care Domains. For example, take the ‘Mobility’ Domain. This is the sort of evidence and level of detail that needs to be considered in assessing needs in the DST:

Mobility

Upon admission to the care home, Mrs X was independently mobile. She was prone to wandering and was assessed as being at high risk of falls.

Since admission, Mrs X has fallen on several occasions, sustaining fractures to her wrist and femur as well as minor skin injuries.

Since fracturing her femur, Mrs X has been unable to stand or walk unaided, although she remains able to walk short distances with full support. A standing hoist and two members of staff are required for each transfer; a wheelchair is used for longer distances. Mrs X suffers from dementia, confusion and memory loss; she does not remember that she can no longer mobilise or transfer without assistance and will attempt to stand and walk unaided. Consequently, she remains at a high risk of falls, as confirmed by her falls risk assessments.

Mrs X also suffers with osteoarthritis in her knees and hip which causes her pain and discomfort upon mobilising. Since fracturing her femur, Mrs X is very unsteady on her feet and she requires two members of staff to provide full support when mobilising. Mrs X remains at a high risk of falls and staff are required to record and report any accidents she may have.

Due to her cognitive impairment and reduced mobility, Mrs. X is fully dependent on staff to attend to her continence and personal hygiene needs. A bath hoist is used for Mrs X’s safety and comfort. Mrs X is encouraged and assisted to alter her position throughout the day to reduce risks to her skin integrity.

Risk assessments completed by the care home indicate that Mrs X is at a high risk of falling whilst transferring and mobilising; her attempts to stand and walk unaided mean this risk is unpredictable. Despite hourly checks by staff, care records indicate that Mrs X has continued to fall on numerous occasions whilst at the home, suggesting this risk is not effectively managed.

There are several entries noting that Mrs X has bruising to different parts of her body for unexplained injuries. It is possible that some of these injuries were incurred whilst falling. Staff are required to check Mrs X regularly for signs of injury and to act accordingly to protect her skin integrity.

Owing to her cognitive impairment, Mrs X sometimes has difficulty in understanding instructions which can affect her mobility. Staff reassure her if she is anxious or apprehensive about mobilising and ensure her safety and wellbeing are maintained at all times.

We suggest you look through the records for supporting evidence in each Domain, for example:

Source Code: GPR = GP records  /  CHR = Care Home Records

DATE	Source	Recorded Entry Details
Undated	CHR	Mrs X mobilises quite independently most of the time but has a tendency to place herself on the floor.  Please observe when mobilising. Pain relief given as prescribed
09/02/xx	CHR	Mrs X needs the assistance of two carers when mobilising
10/02/xx	CHR	Able to walk to toilet with 2 carers
15/02/xx	CHR	Mrs X was found outside on the floor? cause she was helped into the wheelchair and brought in. The only apparent injury was to her L elbow which was grazed
03/03/xx	CHR	Mrs X appears not to be as mobile as recently and mobilises with assistance
10/03/xx	CHR	Mobilised slowly with carers and stick
30/03/xx	CHR	Went to bathroom and fell over with her trousers round her knees.  Accident form completed, checked over for injury non apparent
02/07/xx	CHR	Mrs X went into the lounge and was hovering over a fellow client who can be aggressive, staff persuaded Mrs X to walk into the corridor away from the client but she became agitated and tripped falling on to the floor on her left side, on examination it was found that Mrs X had a carpet burn to her left knee and a bruised left thumb. Once up in her room a cold compress was applied, Mrs X was complaining of pain to the area. Accident form completed. Bruise on thumb very obvious, will be quite sore today
11/07/xx	CHR	Fallen when stood up to get out of bed. Staff next door heard a bang and went to investigate and found Mrs X laying across the floor face down, accident form S1 completed, Mrs X has a sore knee and R hand also scratch about 4 inches long on the R side of her back. .. Mrs X was admitted to A&E via ambulance for x-rays on her r hand and wrist – returned from PGI no apparent fracture
18/07/xx	CHR	Happily wandered around although she had a fall this morning, quite unhurt accident form completed
04/08/xx	CHR	It was noticed on dressing Mrs X that she has a very large deep blue bruise on her right thigh, has not fallen during the day cause unknown
06/08/xx	CHR	Care staff noticed a bruised area on upper back, no fall observed? cause
07/08/xx	CHR	Mrs X has appeared unsettled she has mobilised for long periods refusing to sit down
07/11/xx	CHR	Mrs X is prone to falls – was found by night staff on her bedroom floor this am. Emergency services contacted and taken to PGH A&E with a ?# NOF.  Returned from PGH after x rays diagnosed no apparent injury
07/11/xx	CHR	Mrs X has bruising on right shoulder and right hip after a fall early on in the morning
17/12/xx	CHR	Mrs X was on the floor at start of the shift refused to get up, refused supper was undressing herself on the floor
25/12/xx	CHR	Is unsteady on her feet at times but no reports of falls lately
10/01/xx	CHR	Mrs X tripped over a Zimmer frame and ? # R neck of femur. Emergency services contacted and taken to General Hospital
18/01/xx	CHR	Mrs X’s mobility is now very poor she said, and she suggested one of us to go over and re-assess Mrs X, because she might need to be changed from residential to nursing
04/02/xx	CHR	Fell on 10/1/xx and has # NOF
04/02/xx	CHR	Mobilised through assistance. Stand aid and wheelchair
06/02/xx	CHR	Mrs X has been trying to stand throughout the day. She has eaten and drank well. Stand aid used on transfers
07/02/xx	CHR	Transferred from bed, chair and wheelchair using stand aid. Mrs X tried to stand a few times during the day. Mrs X is being assessed for pads now that she can no longer mobilise independently
10/02/xx	CHR	She has continued to be transferred with stand aid and x 2 carer staff
14/02/xx	CHR	Continue with plan although Mrs X’s needs have changed
24/02/xx	CHR	Mrs X was found on the floor at 8.30pm no apparent injury, no mattress on floor, no pressure mat it was under bed.  Accident form completed, taken air bed off her bed and Mrs X has settled and slept all night…. Mrs X’s condition is rapidly deteriorating today on call GP came out

So, from this one Domain alone, we can see that there will inevitably be some interaction with multiple other Domains, including ‘Cognition’, ‘Skin Integrity’, ‘Continence’ and ‘Medication’. It is this sort evidence and level of detail that builds the jigsaw and the bigger picture of overall needs.

Mrs X’s poor cognition, lack of understanding and confusion directly impact on her mobility. She is vulnerable, unable to assess risk, dangers and hazards, and at high risk of falling and causing herself harm without trained staff intervention at all times. Injuries sustained and poor mobility will impact on her skin integrity and the need for regular repositioning and pressure relieving care to be monitored, and the need for medication (and pain relief to be administered). Her poor cognitive state and lack of independent mobility will impact on her toileting and continence needs, and in turn, her skin integrity. Staff are required to monitor and observe Mrs X to ensure she is safe in her surroundings and environment and will not come to any harm.

The overall scores entered against each Care Domain will be summarised in a single page at the end of the DST, which you can access by clicking this link.

The assessors will then complete the DST by making their recommendations for CHC Funding in conjunction with their assessment, any input provided by the individual or their (family) representative(s), and in consideration of the 4 Key Indicators – Nature, Intensity, Complexity and Unpredictability of need.

Let’s look at the Key Indicators in more detail. The National Framework provides some useful guidance to help identify the sort of things to ought to be considered when making a decision as to eligibility.

The 4 Key Characteristics/Indicators

The National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care (2018) states at paragraph 65, that the reasons given for the decision on eligibility should not be based on:-

• the person’s diagnosis;
• the setting of care;
• the ability of the care provider to manage care;
• the use (or not) of NHS-employed staff to provide care; look only at what was being done.
• the need for/presence of ‘specialist staff’ in care delivery;
• the fact that a need is well managed*;
• the existence of other NHS-funded care; or
• any other input-related (rather than needs-related) rationale.

*For more information on well-managed needs, read our blog: Using the ‘Well-Managed Need’ Principle To Your Advantage.

Practice Guidance Note 3 of The National Framework suggest things that might be helpful to consider, ask and record…

Nature

Nature refers to the type of needs, and the overall effect of those needs on the individual, including the type (“quality”) of interventions required to manage them.

• How would you describe the needs (rather than the medical condition leading to them)? What adjectives would you use?
• What is the impact of the need on overall health and well-being?
• What type of interventions are required to meet the need?
• Is there particular knowledge/skill required to anticipate and address the need. Could anyone do it without specific training?
• Is the individual’s condition deteriorating/improving?
• What would happen if these needs were not met in a timely way?

Intensity

Intensity describes both the extent (“quantity”) and severity (degree) of the needs, including the need for sustained care (“continuity”). The MDT Panel also considers how a series of seemingly low-level needs can combine to create intensity.

The National Framework suggests things that might be helpful to consider, ask and record…

• How severe are the needs?
• How problematic is it to alleviate the needs and symptoms?
• How often and how long is each intervention required?
• How much care is being delivered?
• How many carers are required?
• Does the care relate to needs over several domains?

Complexity

Complexity refers to how the needs arise and interact to increase the skill needed to monitor and manage the care.

The National Framework suggests things that might be helpful to consider, ask and record…

• How difficult is it to manage the needs?
• Are the needs interrelated?
• Do the needs impact on each other to make the needs even more difficult to address?
• How much knowledge is required to address the needs?
• How much skill is required to address the needs?
• How does the individual’s response to their condition make it more difficult to provide appropriate support?

Unpredictability

Unpredictability refers to the degree to which needs fluctuate, creating difficulty in managing needs; and the level of risk to the person’s health if adequate and timely care is not provided. A person may be considered eligible for NHS Continuing Healthcare on the grounds of unpredictability if they have need for monitoring, supervision, or investigations that is not of a nature or extent that a local authority can provide. 

• Are you able to anticipate when the need(s) might arise?
• Does the level of need often change?
• Is the condition unstable?
• What happens if you don’t address the need when it arises? How significant are the consequences?
• To what extent is professional knowledge/skill required to respond spontaneously and appropriately?
• What level of monitoring/review is required?

It is the interaction and interrelationship between these 4 Key Indicators and how they impact on each other that is important.

Don’t forget that any one of the Key Indicators alone, or in combination with others, could be sufficient to present a ‘primary health need’ and justify CHC Funding.

Later in the series we’ll be looking in more detail about the interaction of needs across the Domains and some tips for writing the Key Indicators.

Learning valuable lessons prior to your MDT Assessment and how to avoid pitfalls

Preparing for the Multi-Disciplinary Team Assessment

What Happens At The Multi-Disciplinary Team Meeting?

Don’t let the Decision Support Tool become a ‘tick box’ exercise

What Is The Role Of The MDT Coordinator?

Can The MDT Panel Refuse To Proceed If I Have An Advocate?

Who completes the Decision Support Tool in NHS Continuing Healthcare?

What to do if you’ve been excluded from the MDT Assessment?